The Frustrating Side of Epilepsy

I could go crazy wearing this “S” all day across my chest all day …I can’t be super all the time. -Chrisette Michele

I am usually the motivator, the one my friends and some fam come to for advice. To be that voice of reason, or to give them that cut throat, no bs advice LOL. No seriously I’m going to tell you what you need to hear and not what you want to hear. They will tell me all the time “Whitney I have to mentally prepare myself to talk to you when I know I want advice because you will be completely honest.” I have no filter but after I tell you about yourself I will sit with you, work out a plan and also pray with you. All facts, if I’m lying any one of you can comment below..remember I know ALL of your secrets haha jk! I always seem to be that strength for everyone but sometimes this superwoman falls apart. I have to take my cape off and face reality. My reality is..my seizures are still not under control 🙁

Thursday I had an appointment with my neurologist. I see him about every 3 months, fun right?. After going over my seizure journal from the past few months, he decided to change my second medication. I was previously taking Keppra and Topamax daily for my seizures, along with daily vitamins to help with side effects. Since January, my life took some rather drastic turns from someone very close to me being diagnosed with pancreatic cancer to me making some very personal decisions in my own life. What’s one of the biggest seizure triggers? STRESS!

I’d like to say stress was the main cause of the 12 seizures I suffered from January to April. And those were the ones I was able to record. They do not include the many staring spells. See I’m not the type that have to tell people every single time I have a seizure. I mainly tell my mom of course because she would pretty much knock me out herself if I didn’t! While in my neurology appointment I also told my neurologist about the sudden jerks I experience in my sleep and the extreme migraines I’ve been waking up with. We then discussed the seizures I have every single month during my menstrual cycle. I could be seizure free for weeks but as soon as that time comes then BAM here comes the auras and the seizures. From here we were on to something.

My doctor looked at me and said “Whitney, I know you and I know you already know the type of seizures you are having. You do your research before you come here and you only really come to see if you’re right.” That’s true, everybody knows I spend hours researching, learning, got to know what’s going on because I need to be informed and not caught off guard by “doctor lingo”. The seizures during sleep or happening in waking hours are called Nocturnal Seizures. The seizures I have during my menstrual cycle are called Catamenial Seizures. The course of action was to take me off of the Topamax and put me on TrokendiXR a day to help with the nocturnal seizures. He then added a 3rd medicine I take only once a month to help with the catamenial seizures so yes that’s THREE FLIPPING MEDICATIONS. So my 4 types of seizures Grand Mal, Temporal Lobe, Nocturnal, and Catamenial. What awesome brain I have.

*insert long sigh here* I had reached my breaking point. We left the doctor’s office. I started to instantly get a headache and knew I was about to have a panic attack. We got back to the car and I burst into tears. The day of those appointments are always the hardest. Why am I not getting better? Why is there No cure? All the doctors can do is give different medications and hope it controls the seizures. Now I have to battle new side effects. Will I sleep all the time? Will my hair fall out again? After I completely lost it I prayed. I know I serve a God of healing. I know He protects me.

After an extremely rough day I remembered I signed up to do not one, but two awareness walks over the weekend. I signed up to complete the Walk to End Lupus for people who I care about dearly and another Epilepsy walk here in Dallas. I may get down but it’s only for a short time. I always have so much more to smile about. That’s why I constantly ask people just let me cry, let me shout. I don’t do it often so when that break through comes oh please let me get it out. There’s a frustrating side to all of this. I turned to a good friend’s blog “It’s Okay to Cry” to remind myself that I am still human and that I shouldn’t have to hide that I have feelings. Or that because people are so used to seeing me so well put together and so positive that I too can have my moments of falling completely apart. Thats the only way I can get back to the drawing board and figure out my next plan to tackle this obstacle in front of me. Even though I advocate and I tell others keep pushing, I still battle this every day of my life as well. I will win….One day. It is not the end but I will make the best of every new day I am given 🙂

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0 thoughts on “The Frustrating Side of Epilepsy”

You are so strong Whit! Not only because of how much you help others and are always here for us, but because you admit that you are able to cry and scream when you need to. We all do and it is just something we need to do. It is not because we need anything in return, we just need to let it out! Lots of love to you! Always!

I found your blog on Pinterest and I am so grateful I did!! I have recently been diagnosed with Complex Partial, and Absence seizures. I have done all the beginning tests and am working through how this has changed my life, but like you I am in the process of letting the Lord show me He is the ULTIMATE HEALER and He is in control.

I am happy that you found me! Welcome 🙂 if you have time, read through any post that may interest you. You are so right God is the ultimate healer! I am here for any support you may need. You can find me on Facebook “Changing Focus Epilepsy Edition” Twitter: CFEpilepsy and Instagram: changingfocus18.. I’ll be blogging more soon so be sure to follow via email ..you are right, it is def a life changer just don’t let it change you..NEVER GIVE UP! We are in this together!

I am so happy that I found you and this blog – it’s nice to see someone else talking about the shitty side of epilepsy and how we always have to put a “mask” on…. I have been dealing with my seizures for a while now, was able to work again and ended up having 3 grand mal seizures at work, leading to a lovely hospital stay… keppra has helped but i have noticed how tired and lethargic i am, I don’t want to do anything anymore, and my muscles hurt. But I do appreciate you sharing with everyone! I have added this blog to my followers list!

Lindsie thanks for sharing your story as well! I definitely understand the suckiness of Keppra. I found putting myself on a time schedule to take it, really helped a lot. Then eating certain foods and also fighting my sleep for the day time dosage to put my body back on a normal routine, helped. Seizures aren’t all butterflies and roses but we still can lead amazing lives with them 🙂 Be safe!